EFECT Feasibility Study in Clinical Practice (Effective, Fast, Effective Clinical Tools)
Scientific Focus
This study aims to assess the feasibility of the ESSENCE-D web-based diagnostic aid in a clinical practice setting, by interviewing and testing the tool with those who use it; this includes clinicians, practice managers and parents/carers.
Overview
The ESSENCE-D tool has been developed to support a holistic neurodevelopmental assessment of children. It provides a secure online screening environment where parents answer a set of questions about their child’s neurodevelopmental profile, without guiding them towards a specific diagnosis. Once the parent responses have been submitted, the clinician can access the results. These are displayed using colour grades to indicate the degree of neurotypes from none, to moderate to highly likely. It is not a standalone diagnostic tool but is designed to inform decision-making. Our study aims to assess whether the tool supports the core principles of early identification and intervention, holistic assessment and supports the clinician from a functional and diagnostic viewpoint.
Partners: NHS Nottingham and NHS Cambridgeshire
Principal Investigator: Dr Claire Davidson-Jamieson
Research Assistants: Dr Anne Mcfadyen and Michael Saiger
Summary of findings
Question: What are clinicians' thoughts and experiences about the possible use of digital tools to help with a neurodevelopmental assessment?
Why was this study done?
More children and young people are being referred for neurodevelopmental assessments. This includes assessment for:
- autism
- attention-deficit / hyperactivity disorder
- learning disabilities
- developmental language disorder or language disorder co-occuring with autism, learning disability or hearing impairment
- motor coordination difficulties
NHS services are finding it difficult to keep up with demand, and many families face long waits.
Researchers wanted to find out whether digital tools could help support the assessment process.
What did the study look at?
The study took place in 4 NHS services across:
- Scotland
- England
- Wales
Researchers asked clinicians and service managers in the NHS services in Scotland and Wales what they thought about a tool called ESSENCE-D (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examination - Diagnostic aid). ESSENCE-D is completed by parents and is designed to help clinicians assess all areas of neurodevelopment, on one online platform.
Clinicians were interviewed about their thoughts before using ESSENCE-D They were given training on how to use it. Clinicians were then given opportunity to use ESSENCE-D for up to 3 months.
In the NHS service in England paediatricians were asked what they thought about a tool called DAWBA (Development And Wellbeing Assessment). It is completed by parents and is designed to help clinicians assess areas of neurodevelopment and mental health problems, one online platform.
Paediatricians were asked about their thoughts of using DAWBA to help with neurodevelopmental assessments, but they did not try out the tool.
What did participants from all sites like about the idea of using digital tools?
Most clinicians and managers like the idea of a holistic approach.
This means looking at lots of different areas of a child's development at the same time.
Participants thought the tools could help to:
- reduce the number of questionnaires families have to complete
- bringing information together in one place
- help clinicians understand a more complete picture because the tools was holistic
- provide evidence to support referring for ND assessment
Many participants anticipated that these tools could be most useful early in the assessment pathway, such as:
- before the first appointment or at the first appointment
- when deciding which service is more appropriate (ND assessment or CAMHS, or both)
- to help decide if the referral is appropriate
What general challenges were identified that were raised across all sites?
Participants suggested that some families may find it harder to see digital tools because of:
- limited access to technology
- digital literacy difficulties
- language barriers
Participants also said that:
- learning a new system takes time
- services are already under pressure
- staff need enough mental capacity to try something new
Some clinicians also felt that parents could become overwhelmed if they were asked to complete the digital tool alongside existing assessments.
The digital tool needs to be used instead of paper questionnaires.
What was the experience of using ESSENCE-D?
Seven clinicians used ESSENCE-D with families. They used it with a range of 2-5 families each.
Most found it:
- easy to set up
- easy to use
- straightforward of parents to complete
Families usually completed the questionnaire within one week of receiving it.
Clinicians liked that the questions were broken into chunks. For example, a section about social skills and a separate section about motor skills etc. Clinicians thought that this structure would help all families be able to complete it more easily.
Opportunity for improvements
Clinicians felt ESSENCE-D has potential, but it is still a tool in development. This means that some areas will benefit from further refinement.
They suggested:
- improving some questions so they are clearer. This will help improve the information received by the clinicians
- providing more information about how scores are calculated
- creating an easier-to-read summary report for clinicians
- providing an alert to let clinicians know when the tool has been completed. This means clinicians won't have to keep checking it too.
Clinicians only used ESSENCE-D with families that they knew well. They felt it needed refinement before using the tool at initial appointments.
Other feedback about holistic tools
Consultant paediatricians were generally positive about DAWBA from looking at it only (they did not use it).
However, some had concerns about the mental health section because some were unsure whether managing those difficulties fell within their role. Also, there are long waiting lists for child and adolescent mental health services who can offer support.
DAWBA is modular, which means only certain parts of it can be used. More training about DAWBA might help paediatricians understand and decide if using the mental health parts would be helpful or not.
What did the study conclude?
Clinicians and service managers felt that holistic digital tools could help bring together information about a child's needs and support neurodevelopmental assessment.
Participants saw the greatest potential for use earlier in the assessment pathway.
However, they also felt that ESSENCE-D will benefit from further refinement, especially before using it at initial appointments because the clinician will not know the family well at these points.
Most clinicians would be keen to be involved in the refinement process.
The study highlighted the importance of ensuring digital tools are accessible for all families and of involving clinicians and families in future development of these tools.
